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We're excited to share with you all the results of our patient-views-on-diabetes-tech survey, being unveiled at the Summit today. Here's the scoop:

The DiabetesMine 2013 Patient Voices Survey has found that according to patients, the factors that would most improve their quality of life are not being sufficiently met by diabetes technology currently in the market. The survey shows patients attribute this to two factors: one being the technology itself, and the other being limitations on access to the devices.

The DiabetesMine Patient Voices Survey includes data from nearly 800 patients and caregivers active online, and was conducted in the summer of 2013. It was promoted here at the patient news site DiabetesMine.com, and on TuDiabetes, Diabetes Daily and several other diabetes networking sites. Respondents are therefore a self-selected group of the most active and engaged patients and caregivers.

Participants overwhelmingly stated that the most important quality of life (QOL) improvements they seek are, in order of priority:

1. "fewer glucose highs and lows"

2. "feel more in control of my own care"

3. "less daily hassle"

Interestingly, "fewer shots" and "fewer fingerpricks" (often touted by vendors and the mainstream media) rated toward the bottom of a list of seven QOL priorities.

Technology Limitations

Among this group of highly engaged respondents, over 40% reported that they "never" download or view reports of the results from their fingerstick glucose meters, and 60% never do so with their continuous glucose monitors. At the same time, almost 35% said they do use software or mobile apps for diabetes data logging once a month or more.

Respondents indicated that the changes most needed to make diabetes logging data more valuable to patients, in order of priority are:

programs that spot and highlight trends in the data

ability to give recommendations for changes in therapy — rather than just storing and displaying raw data

capability to view and analyze their glucose data, insulin dosing records, food and exercise records and other relevant data all together in one place, and

guarantee that a doctor or diabetes educator would take the time to review and discuss the data with patients

In addition, survey respondents entered more than 3,200 written comments in response to a number of open-ended questions; a consistent theme was frustration over lack of interoperability and integration (with other devices and with Mac/Apple iOs), and lack of data sharing capabilities.

When asked about overall use of smartphone apps for diabetes purposes, less than one-quarter of these highly wired patients reported using them. Even among those who did, use of diet and food apps ranked first, followed by exercise tracking, and glucose logging apps ranked last, being used by only 19%.

Access Limitations

When asked to rate their biggest frustrations with current diabetes tools, respondents overwhelmingly chose "too expensive" over issues of design or ease of use.

Two-thirds of respondents also stated that access via their insurance is "highly influential" in the diabetes tools they choose to obtain and use.

Emphasis on the financial burden was underscored in a question about use of continuous glucose monitors, powerful devices that have nevertheless been slow to gain mass adoption. When asked to rank the biggest drawbacks of these devices, 45% ranked "out of pocket costs too high" as a bigger issue than other common complaints, including "annoying alarms," "uncomfortable to wear," "too much time investment," and "need easier way to analyze the data."

Motivation

We also asked patients to rate factors that would likely or very likely motivate them to put extra effort into their diabetes management. The top two choices were "positive feedback from healthcare providers" (i.e. simple positive reinforcement) — followed closely by "incentive programs" (financial rewards, discounts, etc.)

In the comments section, respondents consistently mentioned the desire to:

"have a diabetes mentor" or "work in a group or team"

receive positive feedback for their efforts to control glucose levels "regardless of the results," and

have a system in place that holds patients accountable, while assisting them to make treatment adjustments "in a timely manner"

With the Healthcare Establishment's current emphasis on Patient Compliance/ Medication Adherence, these responses appear to highlight a need to gain better understanding of patients' real-world concerns and motivators.

Patient Perspectives on 'Improved Outcomes'

When asked which outcome measures Insurers should focus on most in determining which diabetes tools to cover, respondents indicated that two factors are of nearly equal importance to the currently used A1C (test of three-month glucose level averages):

the frequency and severity of diabetes complications, and

improvements in daily glucose results (i.e. more daily "time in range" — as opposed to A1C, which indicates only an average level over the previous 120 days)

In the extensive comments section, survey participants called for Insurers to broaden their focus beyond the A1C test, which "does not sufficiently reflect the current or long-term well-being of patients with diabetes." Respondents would like to see new measures of "patient satisfaction, better overall health and fewer complications."

To this end, survey participants called for diabetes decision-makers to help them with the following:

Obtain devices that are comfortable, discreet and accurate

That can predict glucose highs and lows

That require less thinking about the daily concerns of diabetes, assist with more time in range, less hypoglycemia

Move beyond proprietary systems to allow data sharing for a "full picture" of diabetes management, and give patients unrestricted access to their own medical information

Require less hassle with insurance / billing — both in terms of insurance filing requirements and access to necessary consumable ongoing supplies such as glucose test strips

We have a nifty infographic summing this all up, coming soon. Plus the full report of survey results will be posted on Slideshare shortly.

Our great hope here at 'Mine is that the Powers That Be can use this information to better deliver on the promise of diabetes technology — the topic of today's Summit, of course!

Disclaimer: Content created by the Diabetes Mine team. For more
details click
here.

Disclaimer

This content is created for Diabetes Mine, a consumer health blog focused on the diabetes community.
The content is not medically reviewed and doesn't adhere to Healthline's editorial guidelines.
For more information about Healthline's partnership with Diabetes Mine, please click here.

Thank you for sharing your feedback.

Amy, thanks for sharing these results... most of which I'm not surprised by. I'm really looking forward to seeing news from the summit!

mollyjade|2013-11-15

I think the fact that positive reinforcement is so highly rated is important. A good appointment is one where I leave feeling energized and ready to recommit to good care. Acknowledging the work I'm putting into diabetes care goes a long way toward that.

Tim omer|2013-11-16

with the current power, cheap cost and easy access to technology we now have, is now the time for us diabetics to take things in to our own hands and hack the technology we have to better meet our needs? Great article

Type 1 Electrical Engineering Student|2013-11-17

Great article. The information is very insightful on where the technology needs to go.

ED BASEHEART|2013-11-17

I'M SO GLAD TO HAVE STUMBLED UPON THIS SITE. I'M LOOKING FORWARD TO FUTURE COMMENTS AND PROGRAMS AND RESPONSES, IDEAS, ETC

Ollie Glass|2013-11-22

Thanks so much for running this survey and sharing the results. I'm working on a free blood sugar trend app, and building on Nial Giacomelli's free iPhone logging app Diabetik (http://thediabeticjournal.com).I'm building the trend analysis tool I want to use, and it's great to know there's lots of people looking for this as well.I wrote a few words about the your survey and the trend app in Diabetik's forums, http://diabetikapp.com/community/index.php?/topic/2571-diabetik-viewer-new-hypo-view-import-from-dropbox-mobile-view-beta/

Evelyn Guzman|2013-11-22

This is the greatest diabetes survey I have ever seen. And the results are shown so effectively that everyone who may want to make some change on their care plan can do so easily.However, will the power that be, that is the insurers and the technology manufacturers, heed the cry for help I see in the results of the survey? That is something we have to wait and see, and hopefully not for long.

sue whittier|2013-11-23

Thanks for the excellent graphs / summaries!' a consistent theme was frustration over lack of interoperability and integration (with other devices and with Mac/Apple iOs), and lack of data sharing capabilities.'So true. I just did a Net scan and could find only two device companies tha make monitors for both BG and BP[size of the original cell phones!] - those of us who are baby boomers are finding both are useful now. On the other hand the device manufacturers now must think PWDs not only have a lack of insulin, but intelligence as well. The current marketing seems to focus on colour. size of device speed of result and whether or not a code is required - wasn't the mobile phone era christened with passwords? And rather than blame the customer, why not put that focus on the software developers asleep at the wheel. And for all the simplicity / colour we lose the ability to keep decent records / including exercise / food / health status / unusual events.I still expect the time I spend for recording diabetes data to be short. in one place - wherever I am - it can be moved to another device at a later date [[very little Bluetooth so far - talk about squelching incentive!]. Because of this old technology,can anyone suggest a tablet that has both a USB port and SD port? ..transition? Happy Thanksgiving to everyone!

A field guide to The Diagnosis Difference | Susannah Fox|2013-11-26

[...] Someone living with diabetes might check out Diabetes Mine to learn how other PWDs (people with diabetes) rank tech tools and quality of life measures. [...]

[Reblog] A field guide to The Diagnosis Difference (with a request from the the blogger, Ms. Fox for responses) « Health and Medical News and Resources|2013-11-27

[...] Someone living with diabetes might check out Diabetes Mine to learn how other PWDs (people with diabetes) rank tech tools and quality of life measures. [...]

Diabetes Mine Innovation Summit 2013 | theperfectdâ„¢|2013-12-05

[...] We’ve got concerns. And complaints. And wishes. And if you want to see the survey results, the data is all right here. [...]

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